One of the questions a professional speaker never wants to hear is, “What’s wrong with your voice?”
My friends in the Wisconsin chapter of the National Speakers Association started asking that more than a decade ago.
They could hear me straining, almost as though I was tightening my throat muscles. I felt it, too, and tried everything I could to make the words come out smooth, but to no avail.
The voice coaches were beside themselves.
“You talk lazy,” one coach kept chastising me. “Use your diaphragm when you talk.” So I signed up for a series of voice coaching lessons with her. They didn’t help.
An ear, nose and throat specialist examined me and couldn’t find anything wrong. She concluded it was a mild case of acid reflux, even though I didn’t have any of the symptoms.
She referred me to a physical therapist for voice. That coaching, which included a series of voice exercises three times a day, didn’t work either.
I spent a small fortune on expensive throat sprays, Throat Coat teabags, CDs, tapes, books and other sources of information on how to improve my voice. Eventually, I gave up in frustration and got off the speaking circuit because my voice never improved and because I had become weary of all the travel hassles.
A Voice ‘Like a Little Old Lady’
Over the years, my voice slowly worsened, and my customers noticed. Several people who bought recordings of teleseminars I hosted said, “You sound like you’re nervous” or “You sound like a little old lady.”
On one of my YouTube videos, someone commented, “She sounds like she’s talking from the inside of a toilet.”
Maybe those stories in People magazine about Michael Douglas battling throat cancer were the push I needed.
In February, my internist referred me to Dr. Joel Blumin, chief of Laryngology and Professional Voice at the Medical College of Wisconsin. He diagnosed spasmodic dysphonia, a rare voice disorder that starts in the base of the brain and affects about 50,000 people in North America.
When a person with SD tries to speak, the brain sends signals that cause involuntary spasms in the tiny muscles of the larynx, making the voice sound tight, strangled, breathy, whispery or—in my case—strained. The spasms often interrupt the sound, squeezing the voice so that words and sentences are broken up.
Researchers don’t know what causes SD and there’s no cure for it. Voice coaching does little good. Surgery often isn’t effective.
Botox to the Rescue
But for most SD patients, botox injections, into one or both vocal chords, stop the spasms and improve the voice temporarily. Dr. Blumin injected one unit of botox into each vocal chord, through my neck, on March 16. The anticipation was 10 times worse than the treatment. It’s no more painful than a flu shot.
The next day, my voice was perfect. The day after that, I sounded like Betty Boop or Minnie Mouse on helium. My voice improves little by little each day and, some days, sounds worse than the day before.
I’m in Elite Company
Turns out I’m in elite company.
NPR talk show host Diane Rehm was diagnosed with SD in 1998. In this video, she discusses her four-month absence from her radio show, the diagnosis, the depression that followed, and how she has recovered:
She eventually wrote a book about it called Finding My Voice.
Robert F. Kennedy Jr. also has SD. When he appeared on “Larry King Live” three years ago, the blogs and discussion boards were filled with comments the next day from people wondering if he had, among other things, lung cancer. Here’s a video of the interview:
Scott Adams, creator of the Dilbert cartoons, has SD, too, and describes how it has actually changed his personality.
How I’m Recovering
I’m taking no medication for my SD and plan to continue with the botox injections about every three months. My throat has never hurt from SD, and it still doesn’t.
I’ll schedule coaching, training, teleseminars and webinars around my treatments, relying mostly on guest experts and giving my voice about three weeks recovery time after each $2,500 treatment. If necessary, I’ll hire voiceover talent when I’m creating screen-capture videos.
I don’t know if I’ll recover enough to go back onto the speaking circuit regularly.
My doctor says it will take about three treatments before he knows exactly how much botox to inject so that it lasts long enough without making my voice sound “breathy.” He says people who use their voice professionally—like speakers, singers, attorneys and the clergy—can often do just fine with the botox injections, once they and their doctors hit on the exact dosage.
Several months ago, before I saw Dr. Blumin, I committed to speaking at Author U on May 7 in Denver, Colorado. Judith Briles, the gracious event planner who invited me, knows about my SD and says “on with the show.” She’s confident I’ll be OK. I am, too.
Depending on how this all turns out, I might return to a voice coach who has experience with SD patients.
Where to Find Help
If you know someone who is concerned about their voice, please show them the National Spasmodic Dysphonia Association website and this blog post. Because SD is so rare, many doctors and voice coaches still don’t know about it.
Since my diagnosis, I’ve contacted many SD patients throughout the U.S. A few don’t talk on the phone, so we email back and forth.
Some were misdiagnosed. A man in Milwaukee told me his doctor said his voice problem was nothing more than stage fright. Another woman was misdiagnosed with acid reflux, like I was. Another SD patient was told “it’s all in your head” and she was referred to a psychiatrist.
I promise to keep you updated as my treatments progress. And even though I’m not a doctor, I’ll answer any questions you might have about SD, or refer you to other experts who can help. I remain eternally grateful, and thank God every day, for my otherwise perfect health.
As for that photo at the top of this post, that’s my Betty Boop bookend, one of about a dozen Betty Boop items, from buttons and dolls to ankle socks and T-shirts, I’ve been collecting over the years so I can keep my favorite cartoon character nearby. Hmmmm.
Update on April 7, 2011:
Thank you, everyone, for the outpouring of support.
I especially want to thank several wonderful women:
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- Vicki Orazem, an SD patient who I tracked down after I saw her name in the SD newsletter a few months ago. Vicki, an adjunct professor in education and child and human development at Montana State University, has been living with SD for several years.
“I changed my career from that of being a higher education administrator to teaching as a distance educator— primarily because it was how I could best express myself. I prepare the content and have learned how to present it online, through the use of creative media techniques, most of which are non-verbal.”
It sounded like we’d be a perfect fit. So I reached out to Vicki, without ever having met her, and asked her to be my “SD sponsor.” She said yes, took me under her wing, and answered questions like, “Will I fly off the table when I feel the needle go in?” (“No, it’s really not bad at all.”)
- Vicki Orazem, an SD patient who I tracked down after I saw her name in the SD newsletter a few months ago. Vicki, an adjunct professor in education and child and human development at Montana State University, has been living with SD for several years.
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- Chris Clarke-Epstein, CSP, a past president of the National Speakers Association and certified speaking professional, one of the first people I confided in a few months ago when I decided to seek a second diagnosis for my voice problem. She told me about Diane Rehm. Chris also helped me work through what we call “Plan B” for my business, just in case my voice isn’t strong enough to continue my training.
- Nancy Mills of The SpirtedWoman.com, who introduced me to Linda Jay Geldens, a copywriter and editor and SD patient who wrote this post, at Nancy’s blog, about living with SD. Linda called, we traded SD stories, and she actually made me laugh.
The list will continue to grow. For that, too, I am grateful.
Hi Joan,
Isn’t it remarkable that a woman who has so much to share and say has this to contend with? Whether your voice is spoken or expressed through your ezine or blog, I can assure you that your message carries far and wide. You are in elite company for reasons well beyond the current diagnosis. I feel lifted up by this post and wish you — as always — the very, very best.
Thanks, Nancy, for your support over the years. It means a lot to me, and you’re one of my favorite Hounds!
Very interesting. I didn’t know about DNS at all. As a professional radio announcer in a past life (several years at a local NPR station + college radio) I understand how the voice conveys our personalities and intentions.
For general suggestions for anyone’s voice, I found the following to be of great importance:
1. Always lower your voice at the end of sentences. When you see a period, bring your voice down. It makes you sound like you know what you are talking about–a person of authority. Lifting your voice at the end of a sentence makes it sound like there’s a question mark there, or you run the risk of sounding like a Valley Girl saying “Whatever”.
2. Make sure your breaths are only at periods, commas, and punctuation marks. When you take breaths at other times within sentences, it can sound nervous.
3. Always smile when talking, even on the phone. It lifts your soft palate and makes you sound ever so much more friendlier.
Cheers,
Anne 🙂
Anne, thanks for the voice tips. You can bet I’ve heard them all from the army of voice coaches I’ve worked with!
Congratulations on your courage in sharing your experiences. I’m sure you are already helping others.
Roberto, I found quite a bit of information about SD online. And the National SD Foundation send a packet of material to me a few days after I requested it at their website.
Hi Joan,
Thanks for sharing about your struggles. I’m a speech pathologist and I worked with at least one patient in graduate school who had SD. They were receiving botox, too. I wanted to ask you about your voice on the last teleseminar (but didn’t feel like it was my business). I am so glad that you found the diagnosis and treatment and that you are positive and hopeful about the outcome. The woman I worked with had a good outcome, too. You sounded much better!
Kind regards,
Lynda Stucky
President ClearlySpeaking
Lynda, some of the SD patients whose voices you can hear at the SD website, and with whom I’ve spoken with on the phone, sound much worse than me.
The way SD affects our voices varies from patient to patient. There are SD support groups throughout the U.S. and I’ve met many wonderful people who have stepped up to provide a huge support system and safety net that has helped make this road less rocky.
so glad you solved the mystery and are reclaiming your voice
It’s one day at a time, which sort of makes things interesting. When I wake up, I wonder if I’ll sound like Betty Boop or Minnie Mouse, or something inbetween.
Thank you SO much for sharing this with us! I sometimes read your blog, but have never commented on anything. Your struggle really hit home for me.
I’m 45 and have always been an amazing singer and speaker. I’ve had a lot of vocal problems over the last 3 years and have been working my way through them. I don’t think I have this SD that you’re speaking about, but my heart is with you. You don’t realize how truly precious your voice is…until it’s not the same anymore. Until you can’t rely on it to communicate the way you really want to. You just don’t feel like the same “you.”
Anyway, I hope you will keep us posted on your progress as you promised. And I will sing for you 🙂
April, I can hardly wait to hear the song! (Do you sing jazz???)
You’re so right about not realizing how precious our voices our until we don’t have them. When I see women anchors on the TV news, their beautiful voices catch my attention more than their looks.
Thanks for educating the public about this little-known disorder. Some people who are seeking non-drug alternatives for this spasmodic dysphonia have found great relief with acupuncture.
I haven’t heard of acupuncture for SD. I’ll ask my doctor about this when I go in for my next treatment in June.
Let me know if you need a referral just to discuss — I have one in Kenosha which I know is too far for you to travel but it would be good for research.
Joan,
Your invaluable content, spirit and great sense of humor override any voice issues, but I’m glad you shared this news with your legions of fans. I hope your voice continues to improve, but either way, consider me a lifetime Joan Stewart groupie.
Chris
Thanks, Chris. My pack of wonderful Publicity Hounds keeps me motivated and so very grateful.
Wow! Bet your vocal chords are the smoothest they have ever been ! Seriously, science and medicine are truly remarkable that something like Botox used by millions of women for wrinkles ( and also producing lots of gossip of does she or doesn’t she?) could produce a side technique that could RELLY help millions of people. Good luck with the next few months- and know that a lot of people are hoping you continue spreading the word and being a successful role model!
Thanks, Lydia.
My two sisters and a few of my close friends, upon learning about the botox injections, joked, “Since you’re in the office anyway, do you think can talk the doctor into maybe giving you a few more injections…..”
Joan,
Great article! I can only imagine how frustrating this was for you.
There’s always a story behind the stories we share. Thanks for sharing this one.
Hope you continue to do better.
Amelia
Amelia, it’s a good thing there’s always a Plan B.
Dear Joan,
When we tell our story and share our journey with others we are much more free. Life is so very stressful and we all need support when the mountain looks high. God knows that I do.
You will have lots of support here with we your fans. Just know that you do a fabulous job and I for one have learned so much from you. I wish you didn’t have this stress but it doesn’t take away from your cool factor nor Diane’s either, that’s for sure.
Kindest thoughts and cheers for you,
MJ
“The cool factor”?
I love it!. Thanks for your support, Mary Jane.
I agree. When you tell your story and share your journey with others, it is much more freeing. By the continuous telling and sharing I, too, have been able to stay strong.
My voice leaves me due to allergies. My sinuses flare up & I get drainage down my throat which makes it raw. Even tho I don’t have SD, I can relate.
I enjoy the way you express yourself and I’m glad you were able to find an answer to your dilemna and a solution.
Renee, why don’t you see how professional speakers deal with the allergy problem you described?
SpeakerNetNews at http://www.SpeakerNetNews.com is a wonderful weekly ezine published by Rebecca Morgan. It goes to many thousands of professional speakers and trainers.
You can submit a question and ask for feedback. The question and all the answers are in the Compilations section of the website.
Yes, thank you, for enlightening the rest of us about something most of us have never heard of.
A friend in the National Speakers Association knew of Diane Rehm’s struggle with SD and told me about it a few months ago when I mentioned to her that I wanted to get another diagnosis.
Wow. Thanks for sharing your story – the problem and the solution, Joan.
I also appreciated the other voice and speaking tips.
Forward! Wiser!
I’m glad you shared what was happening with your voice. I’ve been worried about you, but since we aren’t like BFF’s didn’t know what to do.
Hi Joan,
Thanks for sharing. I wonder for myself since I have so much hoarseness…maybe worth a check.
I live in Denver and would love to say hello when you’re here. Let me know!
Gail, ask for referrals to a good Laryngologist. (Still can’t pronounce that word.)
You are very, very brave to speak your truth. What we often forget in life – is that it is the inner voice or spirit where are true essence lives. That is what’s count. On that note, you have been dealt a full house. Proud to know you Joan.
I was thrilled when you led me to Linda Jay Geldens. She has a great sense of humor, something you don’t expect when you call someone to chat about SD.
Joan, I’m so glad to hear your voice is on its way to recovery! As another commenter mentioned above, I never felt it was appropriate to ask you about your voice, but I did notice that you sounded strained when I listened to your teleseminars.
I remember that Scott Adams referred to his voice as “strangled” when he was dealing with the worst of SD. I was still reading his blog regularly at the time he was diagnosed and began treatment with Dr. Morton Cooper.
As a speaker, I am also sensitive to changes in my voice. A few years ago, I experienced hoarseness for a few months before I was (correctly) diagnosed with GERD. Now I’m careful to follow all the rules for what and when I eat and drink, and my voice is back in shape.
I’m looking forward to hearing more about your treatment and recovery. All the best!
When a friend suggested I might have GERD, I started looking for a doctor who’s an expert in GERD. Thankfully, my internist recommended Dr. Joel Blumin instead.
Joan: Thank you for sharing this very personal story. The first time I heard you speak I wondered if you had the same affliction as Diane Rehm. That was some time ago and I just loved your content so much that I felt it was none of my business.
I am glad you’re finding the help you need. I wish you the best and will continue following and listening.
I never had heard about Diane Rehm until Chris Clarke-Epstein from the National Speakers Association mentioned her.
It is so important to be our health care advocates, and not just leave it up to the practitioners. No one knows us better than we know ourselves, and no one cares more about us than we do. Good for you for pursuing answers Joan – so many people don’t. And I completely echo what Chris Ruys said above!
If an ear, nose and throat specialist can’t find anything wrong, other than a little acid reflux, who else can? I’m thankful that during my annual physical in January, my internist, Dr. James Volberding of Madison Medical Associates, insisted that he refer me to Dr. Blumin.
Joan – As a years-long subscriber to PH and buyer of several of your audio programs I want to thank you for all the effort you put forth to help both aspiring and seasoned publicity seekers to get the best possible results. I admire your courage to reveal your condition to the world and offer you this observation. Your voice is very distinctive and every time I hear you speak it reinforces my perception of the sincere, energetic passion you have for your subject matter. I believe your particular speaking style is part of your brand; what makes you The Publicity Hound. I hope you are able to resume moderating teleconference calls because the impact just wouldn’t be the same without your insight and enthusiasm. Best wishes for a speedy and total recovery.
Nick, I’ve got several great teleseminar or webinar topics in the hopper right now. It’s a matter of finding guest experts to present, and scheduling them around my next botox treatment.
I’ll keep you posted in the newsletter.
Wow, thanks for sharing your voice struggles with us Joan. My prayer is that you will gain full restoration of your voice and will be able to return to the speaking circuit or whatever your heart desires. In the meantime, let your voice rest and get the downtime that you may need.
PS – I saw you about 7-8 years ago at a seminar in Norfolk and thought you did a wonderful job. Don’t know if your voice was affecting you then, but glad you’re not letting this stop you. Very inspirational. 🙂
Yes, Deidre, I had SD back then.
Norfolk was a blast and I still keep in touch with many people who heard me that day.
Joan, I’m so glad that you’ve been able to get some answers to your medical mystery. Not knowing what’s wrong can be such a challenge.
Three cheers for botox and may you continue on the road to recovery! Before long I’m sure you’ll have your full “bark” back.
Thanks for sharing your story so that others know they are not alone.
I’ll have to share the “have your full bark back” comment with my doctor. Thanks for the smile.
I also a a fan of you and your work. I wondered if you had SD when I first heard your voice on a teleseminar I bought. I’m so happy for you that you got a diagnosis so you know how to deal with it. As a vocal coach, I have researched this condition so as not to mis-diagnosis my own clients. I will say that almost all of the time a badly operating voice is just due stinking vocal technique, and can be cured by re-training. SD, as you have said, requires more than re-training due to the spasms not under conscious control. Furthermore, I think it’s absolutely vital that all who work with voices familiarize themselves with the symptoms and sounds of a voice with SD. So thank you so very much for this post… you have no idea how many speakers and singers -and vocal coaches- you may be helping:) And may God speed a cure!
Judy, because you’re a vocal coach, you might know of ezines, print newsletters, blogs or other resources online that might be interested in linking to this post.
If you want to forward them to me, I’ll contact them.
I’m not surprised the many vocal coaches don’t know about SD. Lots of doctors don’t either!
Joan, thanks for sharing your pain and your journey. I firmly believe these things happen in life for a reason and I am so encouraged by how you have responded to this challenge. You are now an inspiration to people in an entirely new category of expertise!
Thanks, Paul. I’ve already contacted the SD association and sent them the link to this blog post, hoping they refer people who visit their website.
Nothing but strength and courage came thru to me from this article. Thank you for extending the knowledge of SD, the number of people you have influenced positively
will be a continuing ripple effect.
Janet, I got an email over the weekend from a speaker who thinks that she, too, might have SD. I was able to lead her to the SD website.
Thanks for posting that.
People need to know if they are not getting better with those proton
pump inhibiters (Prilosec, Zantac, Prevacid, and now banding surgery) that it is something other than GERD – acid reflux. Most ENT’s are not Otolaryngologists – even if they use a flexible scope, they may not use video – which is state of the art medicine.
As a resource, the Voice Foundation is tops. They are surgeons who sing! They work out of Jefferson Medical School and the Curtis School of Music, and they provide referrals.
http://www.voicefoundation.org/
Good Luck with it,
Claude Stein
Hi Joan,
I just read about your SD diagnosis – thank you for sharing your story. While I have never seen your seminars live, I have been reading your thoughtful, informative articles, blogs, e-newsletters for my entire adult life and you are definitely a cornerstone of my continuing ed in PR & communications.
I am happy that the botox is providing relief and I hope it continues to do so.
Thank you for your continued insight and I wish you continued health and happiness.
Warmest Regards from one of your biggest admirers,
Cheryl Tessier
Just read this, Joan. Thanks for sharing something about your personal life. I use botox, too, but for migraines. It has been a godsend. Nothing else I’ve used in 40 years has worked, but this has given me my life back. Who knew that something that started out as a poison, then became a vanity drug, could become such an important medical advancement!
I am reading a bunch of your newsletters at once and just saw this. I have noticed over the last couple of years that your voice had lost some of its richness and had worried it was something more severe.
You may find also that a good Alexander Technique practitioner could help you as well (I’m not saying drop the botox). I’ve been working with one for several years, and have made huge strides in my comfort,my posture, and many other aspects.
If you’d like me to ask her for a referral near you, tweet me: @ShelHorowitz and ask me for an Alexander Technique teacher. Include the name of the nearest large city to you